Cognitive limitations- IQs range from 40 to 100. Despite IQ, most persons with PWS have impaired judgment. Many individuals have learning disabilities, including Nonverbal Learning Disorder

Dental problems-PWS causes low saliva production which results in thick, sticky saliva, soft tooth enamel, cavities, and gum disease. Products designed to treat dry mouth, such as Biotene toothpaste, can improve or eliminate these symptoms.

Failure to Thrive– Babies may have a poor sucking relax due to the poor muscle tone, and can make feeding difficult

Gastric & Bowel Problems-Gastroparesis (slow emptying stomach) and a slow emptying bowel are common. Often there is an inability to vomit despite severe illness. Stomach perforation or stomach tissue necrosis can result if there is unrestricted access to food

Growth- There is a deficiency in the production or utilization of growth hormone. Unless treated with growth hormone medication, persons with PWS are typically short in stature, have small hands and feet, and other subtle dysmorphic facial features.

High pain threshold–Most persons with PWS have a high tolerance for pain and are often unaware of injury or infection

Hyperphagia- Persons with PWS experience a life-threatening biochemical drive to eat that is not satiated despite the quantity of food eaten

Incomplete sexual development- Babies are typically born with small genitalia. Male babies are often born with undescended testes. Without sex hormone treatment, most adolescents do not produce sufficient sex hormones to progress through puberty

Metabolic issues-Metabolism is about half the normal rate, therefore people with PWS will gain a considerable amount of weight on considerably fewer calories than the typical population. Fat tends to accumulate on the lower torso, buttocks, hips, thighs, and abdomen. Uncontrolled obesity can lead to high blood pressure, respiratory difficulties, heart disease, diabetes, and death. Caloric intake must be significantly reduced while preserving adequate nutrition. Consultation with a dietitian knowledgeable about PWS is recommended

Orthopedic Issues- Scoliosis, kyphosis, and other orthopedic abnormalities are common

Poor Muscle Tone-One of the primary signs of PWS during infancy is poor muscle tone (hypotonia) . Babies may feel floppy when you pick them up and may rest with their limbs loosely extended instead of fixed. Muscle tone improves as the child ages but individuals never develop normal muscle strength and often fatigue easily.

Skin picking– Persons with PWS often pick at their skin which, if not controlled, may result in infection.

Social isolation- Difficulties with social skills may lead to social isolation. Early Intervention programs should include social skills therapy. Individuals with higher levels of insight may be more aware of their differences or limitations which can lead to depression

Speech and language problems-Hypotonia and intellectual ability affect speech and language. Apraxia of Speech, also known as dyspraxia, is common. Oral-motor therapy in infancy and therapies targeted to treat dyspraxia can be useful.

Swallowing abnormalities- Newer research reveals a high likelihood of swallowing problems that increase risk for choking and aspiration.

The PWSA of Indiana web site is intended to provide information only – not to diagnose or advocate particular treatment options. The Diagnosis of Prader-Willi Syndrome should be made through a qualified medical professional. Individuals should only make decisions about treatment options in close collaboration with their own health care team of professionals. Thus, it is strongly urged that patients do not change treatment without first consulting their physician. The inclusion of any resource or link in the PWSA of Indiana Web Site does not imply endorsement.

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New Diagnosis

If your child has recently been diagnosed with Prader-Willi syndrome, we would love to provide you with a bundle of materials, appropriately called The Package of Hope. This encouraging package includes a variety of publications we believe will help answer many of your questions and offer guidance on critical issues. Click the link below to find out more:
New Diagnosis

PWS Midwest Conference

We are excited to be hosting the PWS Midwest Conference October 15th at the Ruth Lilly Learning Center at Riley Hospital. We have a great lineup of speakers from across the US who bring a vast array of expertise. Click on the events tab above to learn more and registration information.